Surviving (with) cancer

When Tien Tao was diagnosed with cancer, he did his research and found that at his age, with his type of disease, one out of two people die.

Then the leader of the cancer support group Tao had joined turned that upside down. One out of two people survive, she said.

So that’s what the retired professor from Carmel has been doing since his non-Hodgkin lymphoma diagnosis three years ago, and it’s what a growing number of people with cancer are doing — becoming survivors.

The term "survivor" can mean different things to different people. For some, it means they have been diagnosed with cancer and are undergoing treatment to fight the disease. To others, it means they were diagnosed with cancer but no longer exhibit evidence of the disease in their bodies. Still others have been diagnosed with cancer, but it is of a chronic nature: It suggests relative longevity, but they will likely be dealing with it for the rest of their lives.

Joy Smith, oncology nurse educator for Community Hospital of the Monterey Peninsula, puts it this way: A cancer survivor is any living person who has, at some point, received a cancer diagnosis. That means, Smith says, that those who leave a doctor’s office after hearing they have cancer and don’t have a fatal car wreck on the way home have begun their survival process.

The number of survivors has increased dramatically in the United States, from 3 million in 1971 to more than 10.8 million now, according to the National Cancer Institute. About two-thirds of people diagnosed with cancer today are expected to live at least five years beyond their diagnosis. And 14 percent of all cancer survivors living today were diagnosed more than 20 years ago.

The increase in survival rates is attributed mainly to four developments:

Improved screening and early detection, such as mammography for breast cancer, the prostate-specific antigen (PSA) test for prostate cancer, the Pap test for cervical cancer, and colonoscopy for colorectal cancer

Improvements in treatment

More effective treatment of side effects, making it possible to give patients higher, more effective doses of cancer drugs

Development of targeted therapies, which are more specific and less toxic than standard chemotherapy

The shifting numbers have spotlighted the need for a new emphasis on survival.

"Regardless of the nature of their survival," says Smith, "all cancer survivors have to figure out how to deal with what they’ve been through, where they are now, and how they will navigate their future.

"Once their treatment is over, cancer patients look forward to getting their lives back to normal. But there is no going back. There may be a high quality of life ahead, but they have to define a new ‘normal,’ get used to a new body, absorb the experience they’ve been through, and find their place in the world again."

Finding their way requires bringing their community of family and

friends and healthcare practitioners up to date on who they are now and the kind of support they need after treatment. To this end, the American Society of Clinical Oncology has devised a survivorship care plan, guidelines to help oncologists work with patients once they receive their cancer diagnosis, throughout their treatment program, and after they complete their treatment.

"The thrust of the program," says Dr. Grant Swanson, medical director of Community Hospital’s Comprehensive Cancer Center, "focuses on three aspects of survivorship. Those areas are: developing a plan to facilitate communication with other healthcare providers, increasing the depth of patient-physician conversations, and monitoring the quality of ongoing care."

The first phase involves a cancer treatment plan for patients recently diagnosed with cancer. This is designed to address questions whose answers, says Swanson, should be very clear: What exactly is my diagnosis, site, type, stage? What are the goals of therapy? What, realistically, is attainable? Am I trying to prolong my life, or am I going to be cured? Can we discuss my current health status, including other medical problems, which may have an impact on my cancer therapy? Can we go through the details of my planned chemotherapy and radiology regimens? What is the duration of my therapy, including the number of planned cycles or treatments? What are the usual major side effects of what you’re going to do?

"I am amazed by the frequency with which patients cannot answer a substantial number of those questions with any clarity," Swanson says. "If they can’t answer these questions, they can’t be proactive in their own treatment."

The second phase is designed for patients completing their cancer treatments. It involves a cancer-treatment summary that answers questions such as: What was the chemotherapy treatment delivered? We planned a specific duration; did we make it all the way there? Did I get my full doses, or did we have to cut back? Why have we increased or stopped treatment? Are we done, is it gone, did the treatment stop working? Where are we now? What were the big problems?

"The main question," says Swanson, "is ‘How did I do with

regard to my treatment?’ The goal is to make it clear."

The third phase involves something revealed in a study by the Lance Armstrong Foundation. Patients often feel doctors have no idea what it’s like for them after the treatment is over, the study found.

"The people who have gone through cancer and are now cancer-free," says Swanson, "often feel like a neglected group. This is one sector of the population Lance Armstrong is focusing on. He’s put the spotlight on what post-treatment cancer survivors are dealing with. We need to determine where there are gaps in what we call ‘best practice’ pertaining to cancer survivorship. What tests should these people have, and what do they do with the results? What do the results mean? And what do they need going forward?"

In this third phase, Swanson says, the questions include: What are we going to do for surveillance in case the cancer comes back or new cancers arise? What are the possible late effects of treatment? Can we make a list of my ongoing healthcare providers and discuss who is responsible for what? How do we keep everyone in the loop?

"Patients also need to discuss what they may need for psychosocial or mental care needs," Swanson says. "They may face issues of stress management, problems with

concentration and memory, communication with family, and the big one — fear of recurrence. They need access to legal information regarding employment, disability, estate planning, healthcare. And if so inclined, patients also need to know of opportunities to reach out to other survivors in the community, to find ways to give back."

Support groups are effective ways to both give and get help, and Community Hospital offers many.

Cancer survivors also have questions regarding areas of their lives not directly tied to their cancer diagnosis and treatment. They have questions about food and fitness and fun.

"In the old days," says Smith, "at the end of treatment, an oncologist would send patients back into their lives, leaving them to fend for themselves and to adjust on their own to all the changes that accompany the cancer journey. We need to talk with their primary-care doctors so they have a better idea of how their patients should be followed through the next phase of life."

The Institute of Medicine of the National Academy of Sciences recognized the sharp decrease in contact between patient and healthcare provider once treatment ends in its report From Cancer Patient to Cancer Survivor: Lost in Transition. Issued in 2005, the report looks at the status and future requirements of the growing number of adult cancer survivors and makes recommendations to assist them.

"In a sense," says Swanson, "part of the survivorship movement is to focus on the different phases of the cancer journey. People want to know how they survive after diagnosis, during therapy, and once their cancer treatment is over. The survivorship care plan is designed to enable millions of people to re-engage in an active life as fully as they possibly can, not to be living in fear."

When talking to cancer survivors about where cancer fits into their lives, Smith uses the metaphor that life is a tapestry.

"All our experiences are the threads we weave together to form the tapestry of our lives," she says. "The goal of survivorship is to strengthen that thread to give our tapestry beauty and meaning and durability. In the medical community, we need to help patients create a balanced perspective, so they are not overwhelmed by their cancer experience, but not underwhelmed by it either, learning instead how to integrate the experience into their lives going forward."

Surviving the cancer experience means changing the way we think about it, talk about it, and live it,the way Tien Tao did. Some survivors can say, "I had cancer." Some say, "I have cancer, but I’m not going to let it define who I am." Others say, "I have cancer, but cancer doesn’t have me."